Autistic Prodigies Since “Rain Man”

Our evolving understanding of “the engineer’s disease.”

The list of off-the-charts young achievers associated, in retrospect, with Asperger’s syndrome extends a long way back. You may…By Ann Hulbert

The list of off-the-charts young achievers associated, in retrospect, with Asperger’s syndrome extends a long way back. You may have heard that Bill Gates has been informally diagnosed with it. So, after the fact, has Bobby Fischer, obsessive and unable to look anybody in the eye. The label has been applied to Newton, Mozart, Yeats, and Wittgenstein, too. All of these recruits, of course, grew up well before the autism spectrum disorder—called by some “the engineers’ disease”—claimed a place in the 1994 revision of the Diagnostic and Statistical Manual of Mental Disorders, psychiatry’s authoritative guide. Nearly 20 years later, in 2013, the Asperger’s label was officially dropped. But high-functioning autism had come trailing an aura of precocious genius, along with painful social cluelessness, and that aura was here to stay. The very bright yet remote “little professor” profile has become, as a journalist put it, “a signature disorder of the high-tech information age.” Unofficially the diagnosis, rooted in descriptions published in 1944 by the Viennese pediatrician Hans Asperger, is still with us—a portent of struggle, surely, yet also perhaps of unusual potential. Hadn’t Asperger said that “for success in science and art a dash of autism is essential”?

An unsettling experience, or some version of it, no longer belongs to obscure lore: A wriggly toddler, obsessed with numbers and letters, is already spelling out words—when he isn’t intently lining up his toy cars or melting down at loud noises. Perhaps he begins to seem even harder to engage than usual. Or a teacher or relative remarks that he isn’t really interacting with other kids. A parent’s something-isn’t-quite-right feeling intensifies. It is time to turn to, where else, the Internet. Venture beyond Urban Baby and there, awaiting discovery, is a new term that might help explain an avid, and cuddle-averse, code-breaker: “Is my child an autistic savant?” Darold A. Treffert, a soft-spoken Wisconsin psychiatrist in his 80s who has been called the “godfather of savant research,” was surprised by how often visitors to his website sent that question to his inbox as the new millennium got under way. Hopes and fears about what a child will grow into, or out of, can take sudden swerves.

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An expert consultant on the multi-Oscar-winning Rain Man (1988), Treffert had banished the old idiot prefix and helped spread an awareness of a disorienting phenomenon: remarkable gifts emerging in tandem with profound neurological problems—and “without lessons or training,” he marveled. In the film, Dustin Hoffman’s Raymond Babbitt, fidgety and uncommunicative, could count spilled toothpicks at a glance and multiply big numbers very fast. Neuroscientists and psychologists, though stymied by a sample size too small for rigorous study, were fascinated. Musical gifts (including absolute pitch), artistic flair (generally hyperrealistic), calendrical agility (naming the days of the week on which particular dates fall), computational virtuosity: The startling skills, accompanied by astonishing powers of memory, seemed to be disproportionately associated with autism.

Treffert had a new prefix for those who burst forth with more than “splinter skills.” They were “prodigious”—the rarest subcategory of already rare savants, who would count as prodigies even if they had no disability. Soon enough his informal global inventory of prodigious savants could boast a bona-fide American prodigy, a preteen with a reedy voice and an innocently intent Harry Potter face. His name was Matt Savage, and by the time Treffert met him, he had been hailed a “Mozart of jazz.” Born in 1992 in Boston and given an autism spectrum diagnosis three years later, Matt emerged as the perfect poster child for the newly capacious vision of savant gifts, not that anyone told him the term. Matt, easily overwhelmed by a clamorous world, loved multiplying large numbers, performing calendrical stunts, amassing facts—the telltale memory-based, repetitive sort of talents that cropped up in roughly 1 in 10 people on the autism spectrum. But his real fervor was directed at jazz. He was soon jamming and composing—precisely that kind of creative and improvisational work that had been presumed out of bounds for savants.

There was also a silver lining of sorts. The extreme isolation could be a spur to learning.

Treffert’s unusual club soon had another member, whose mother had found her way to his website. Jacob Barnett was six years younger than Matt. As a toddler in rural Indiana, Jake had retreated into autistic silence, only to reemerge and surge ahead in math and science, astronomy in particular. He displayed phenomenal powers of recall and, barely out of kindergarten, began discussing Kepler’s laws. Jake could also play back tunes and do calendrical computing, his mother discovered before long. Surfing the Internet together, they looked for kids like him. When they came upon other savants, he eagerly displayed similar skills. She called Treffert, who predicted further surprises.

These children were—glaringly, unmistakably—different. And at the turn of the millennium, in a country that for decades had been preoccupied with early extraordinary achievement, the approach to children so incongruously out of step was notably different, too. Their otherness wasn’t explained away or played down or defined up, standard impulses among experts and parents busy spotting and spurring on youthful talent in a meritocratic era. Jake’s academic leaps thrilled his parents less as a sign that he was speeding ahead than as evidence that he could avoid derailment: Terrified when he had shut down as a toddler, they dreaded that ever happening again. Unlike various prodigy predecessors, Matt was quite obviously not on a fast track to popular renown, or cutting-edge inventions, or vast fortunes (or likely to be swept up in an unanticipated wave of competitive interest, as Bobby Fischer had been). His musical obsessions was hardly trendy—not that the small boy noticed. And his parents didn’t much care. Above all, they, like Jake’s mother and father, were intent on helping their hard-to-reach child engage somehow.

Propelled by sudden inspiration and rapt concentration, these strange young minds in turn moved parents and mentors to transcend conventionally ambitious dreams and refocus: Look at how the unusual gifts could work wonders now. Their mastery was stunning, yet what these prodigies highlighted was the mystery of inborn talents. Even if the made-for-prime-time saga of uncanny virtuosity and effortless progress wasn’t the full story for Matt or Jake, as it surely wasn’t, here were gifts that had blossomed so far without competitive pressure. A tidy or speedy script for long-term success wasn’t on hand either. The boys and their families—as well as the experts probing for affinities among prodigious savants, “regular” prodigies, and the rest of us—were playing it very much by ear.

You could say that inside just about every well-rounded young wonder touted in the 20th century there had been a lopsided, often lonely rarity trying to get out. Autistic prodigies at the turn of the millennium succeeded—and then some. The boys invited the kind of awed appraisal that had greeted (and soon grated on) the 19th century’s most famous shut-in child, Helen Keller, and her teacher, Annie Sullivan, christened a “miracle worker” by Mark Twain. He also called her Keller’s “other half.” The pair’s emotionally entwined, pedagogically intense alliance was indeed crucial—and would have been impossible without Keller’s “soul-sense.” That was her phrase for the acute empathy that served as her special radar. Matt Savage and Jake Barnett experienced the opposite: “mind blindness,” the inability to extrapolate the mental states of others that is a signature symptom of autism.

Both the boys and the adults on whom they depended could hardly have been more disoriented—which is not to say they were unfocused. Acutely sensitive to stimuli, fixated on details, reliant on strict regimens and repetitive behavior, cut off from conventional expectations: The profile fit Matt and Jake starting very young. A version of it also fit their mothers, caught up in the all-consuming mission of doing their best to deal with children who weren’t merely out of step with peers, as prodigies always are. Their sons seemed barely to register others. Yet there was also a silver lining of sorts. The extreme isolation could be a spur to learning, as Annie Sullivan had noted in Helen’s case. “She has one advantage over ordinary children, that nothing from without distracts her attention from her studies.”

But first comes the challenge—presented by ordinary and extraordinary children alike—of spotting the something within that might direct youthful curiosity and help develop raw capacities. Prodigies generally make that task astonishingly easy, very early. Yet Matt and Jake are testimony to how obscured those inner interests and aptitudes can be, and how difficult—and crucial—tapping into them may prove. Who knows whether they may be developed into an exceptional talent, but they just might serve as a basic conduit to the world. Or could, if not for a catch-22: Autistic children supply at best garbled signals to guide their elders.

Pixabay

Matt was chattering away and reading at 18 months, and counting Cheerios in his high chair. His parents—Diane Savage, then a computer programmer for a company in the Boston area, and her husband, Larry, a chemical engineer who worked in IT at Raytheon—took pride in their precocious son. At the same time, they couldn’t ignore Matt’s hand-flapping, his failure to make eye contact, his aversion to touch and to all kinds of sounds, even the swishing of windshield wipers. He would throw fits over rituals gone awry. The Savages, who in the early 1990s knew next to nothing about autism, felt they had an explanation for their brilliant boy who demanded quiet, except when he wailed at a noisy world: “He’s so busy learning things, he can’t deal with the sensory side of things was our theory,” Diane said. But Matt’s brief foray into Montessori preschool—he lasted two days before being “officially expelled,” as she put it—tested the theory. Something just wasn’t right, and Diane, a woman used to getting results, now needed answers.

With Jake, the discordance was more dramatic, as his mother, Kristine Barnett, chronicled in her 2013 memoir, The Spark: A Mother’s Story of Nurturing, Genius, and Autism. Before he turned 2 in the spring of 2000, he was a giggly, easygoing toddler who wrestled with his dad and was a wizard with words. He talked early and recited the alphabet backward and forward. He memorized DVDs (not just in English: He liked switching the language selection). He read along with a CD-ROM of Dr. Seuss. But gradually he ceased to speak or respond. Kristine, who poured her abundant creative energy into directing a lively day care center in their garage, watched him gaze for hours at plaid fabrics and patterns of shadows. He would spin in dizzying circles, stare at his hoard of flash cards, shrink from physical contact. At least he didn’t throw fits. Michael, Jake’s father and a Target employee, kept saying it was just a phase. But articles about autism were everywhere now, and Kristine’s mother, struck by one, dared to suggest they had better find out what was wrong.

For both the Savages and the Barnetts, a diagnosis delivered a reverse epiphany. They got no sudden insight into what their sons desperately wanted to do. Instead, it now hit them how much they, the parents, were going to have to do—and how little they, or perhaps anybody, understood what was happening in those young heads. Her multisyllabic talker, Diane now realized after an evaluation at Boston Children’s Hospital, was imitating more than communicating. Churning through books, Matt wasn’t following the plots. The experts proposed the then newly minted Asperger’s label. Six years later, Kristine received the same verdict when a battery of in-home assessments revealed that along with radically skewed skills, Jake had a superhigh IQ. Unaware that Asperger’s was on the dreaded autism spectrum, Kristine was briefly buoyed—and then a second evaluation before he turned 3 put him into the “full-blown autism” category.

The maternal approach, at the outset, was lockstep-parenting-according-to-the-experts of a sort that could make the most Ivy League–obsessed overschedulers look like slackers. “We research the hell out of everything. That’s our scientific approach,” explained Larry, who quit his job to manage the intricate family logistics. (He took up financial investment work from home.) Diane, who left her job as well, immediately turned for advice to the autism crusader then on the cutting edge. The very night she got back from Matt’s evaluation at Children’s Hospital, Diane called Bernard Rimland, the founder of the Autism Research Institute, not expecting him to pick up. It was late, but he did.

He pulled out yarn and wrapped it all around the kitchen. Instead of a “terrible, tangled mess,” she was stunned to find he had woven intricate multicolored webs.

The Savages put Matt on the DAN! (Defeat Autism Now) protocol, the array of dietary strictures and other treatments that Rimland had begun promoting. Matt’s sensitivities, his parents felt, quickly improved. He wasn’t easy to get through to, but they put his hyperlexia to use: Often unresponsive to verbal directions, Matt couldn’t resist reading written notes. He also underwent Auditory Integration Training, another experimental treatment for autism gaining popularity in the early 1990s. And Diane choreographed an intensive weekly regimen of carefully vetted therapy sessions (occupational, physical, speech, behavioral) for him, plus a roster of parent support group meetings and conferences for her.

Every interaction with Matt had an “ulterior motive,” she said. Even what looked like downtime at home was hardly a respite. The purpose of their games was to help him overcome social barriers, learn new behaviors, acquire the basic life skills he lacked. But Diane had rewards at the ready, too—math workbooks and puzzles as treats for a boy who could tell her, and did, “My mind is made of math problems.” The Savages joined a nearby autism preschool collaborative. Still, Diane was exhausted, and Matt, now 6, seemed to be slipping. Bothered by sounds again, he acted out more.

A half decade later, out in Middle America, the Barnetts were several steps lower on the income ladder than the Savages, and their son was drifting further toward the low-functioning end of the autism spectrum. For Kristine and Michael, state-funded professional services for children with autism were the affordable resource at hand—a special education realm by now more systematized than the cure-focused vanguard at the core of Diane’s tailor-made treatment plan. Jake was signed up for the full range of therapy that Indiana’s First Steps program offered children with developmental issues until they turned 3. “The calendar on the kitchen wall was so jam-packed that nobody but I could read the microscopic handwriting I used to cram it all in,” Kristine noted.

Revelation comes in different forms for different people. A biblical verse. A flash of recognition in a lover’s eyes. A Nietzschean proverb. A classical sonata. A child’s embrace. Any moment of profundity, really, where time stops and the divine reveals...READ MORE

Doing further research, and pestering (her word) therapists who had become friends, Kristine wanted to do more. She and Michael added 40 hours a week of “applied behavior analysis” work with Jake, later shifting to a less drill-oriented and more child-initiated “Floortime” therapy (which was just as time-intensive). And when First Steps services ceased, and a summer loomed before state-funded developmental preschool began, Kristine got even busier. She devised more sensory-rich activities to keep Jake from losing ground, enlisting high school volunteers to help.

But she could tell Jake wasn’t really tuning in, and after starting to communicate by pointing at cards with pictures—a big step—he made little progress. She couldn’t help noticing, though, that during the activities he did on his own time (what little there was of it), “his focus was ferocious,” and the results could be startling. That summer Jake was obsessed with Kristine’s knitting basket. He pulled out yarn and wrapped it all around the kitchen. Instead of a “terrible, tangled mess,” she was stunned to find he had woven intricate multicolored webs.

What the two of them needed, it dawned on her, were breaks from the constant work of therapy. Kristine began scooping Jake up, along with a box of Popsicles, for short nighttime outings to a nearby country pasture—plain old childhood fun. He still barely acknowledged her presence, but he was obviously transfixed by the stars, even if he couldn’t tell her that. Several months into their “dates,” he once actually blurted out a “night-night” at bedtime. So Kristine was crushed as she watched the relaxed boy of those summer moments regress when he began heading off on the bus to spend his days in developmental prekindergarten.

However tirelessly they followed the experts’ regimens in the early years, neither Diane nor Kristine was about to settle for mere repetitive structure and drills. Their best guides, as they did their utmost not to forget, were the boys right in front of them—each stuck at a difficult point. Matt, struggling with sensory overload at 6, and Jake, who seemed miles from being kindergarten-ready: Both had their mothers feeling stymied, discouraged by the narrow emphasis on the basic skills their boys lacked. Their maternal reflex, which helped them forge on, was to shift the focus to gifts they were sure lurked within.

His repetitive behavior, much as some autism researchers have speculated, reflected detail-oriented curiosity rather than being merely a self-soothing habit.

“I always believed that even when he was hard to reach, there was a shining star in there,” Diane later told a CNN interviewer eager to hear about Matt. Her goal: “We just had to find a way to get to it.” The rhetoric of unshakable faith in an inner light ran through Kristine’s book, too, an amped-up echo of Annie Sullivan’s insistence on kindling Helen Keller’s interests, bucking straitlaced pedagogy in the process. “I knew my child better than any expert could,” Kristine wrote. “And I saw a spark in Jake. Some days, true, there was only the faintest glimmer.” Framed this way, manic helicoptering became something more like heroic liberating. The top-down micromanaging was supplanted, or at any rate richly supplemented, by bottom-up empowering. Where lore had it that Helen Keller suddenly awoke to the possibilities of language as her teacher spelled into her hand at the water pump, the child-driven drama with these boys was different: Discovering and encouraging their special language was a quest that kept adults on their toes.

When he was 6, math-minded Matt stumbled on his power to make very gratifying sense of a new realm of patterns—thanks to more active help from his mother than she generally took credit for. A second round of Auditory Integration Training that year did more than make sounds bearable for Matt. Diane and Larry, upstairs in their Sudbury house, were stunned to hear him downstairs playing “London Bridge” and other tunes on a rainbow-keyed Little Tykes xylophone piano that came with color-coded music. Now Diane showed him middle C on their big piano, pointed out how the Little Tyke music sheets matched up with the keys, and explained the way octaves worked. For Matt, whose fascination with numbers and ratios had lately spawned an obsession with roller coasters (he loved reciting their speeds and other specs), it all made sense. He quickly figured out the piano’s 88-note language of sound.

Diane once again hurried to the phone. A local piano teacher who came highly recommended (and who, Diane said wryly, sighed when she heard yet another parent touting a gifted child) agreed to meet Matt. His perfect pitch, sight-reading skill, ability to play back what he heard, and astonishing memory—plus his restless energy—left her in no doubt: Here was a “special situation,” in Diane’s words. As Matt careened between piano and couch, knocking over plants en route, he made remarkable—if unruly—progress in their weekly lessons. When he chafed at being told to play the notes on the page, rather than the ones he thought sounded best, his no-nonsense teacher was firm. Classical pianists, she said, stick with scores. Jazz pianists, his ever responsive mother mentioned, get to improvise. As Matt later remembered it, his parents at some point played Miles Davis’s Kind of Blue for him, and it made a big impression.

As Diane liked to tell the story, an event at a crafts fair in Maine the following year made a big impression on them. The family strolled past a jazz band warming up in a tent, and Matt, then 7, yanked free of her grasp. He climbed onto the piano bench, asking to play, and when the surprised sax player proposed a blues tune in the key of B-flat, Matt proceeded to chime right in. In truth, as Diane had “to admit sheepishly,” she was the one who had asked whether the band could play a song with Matt. He would never have reached out that way, and she was just hoping to fend off a tantrum as she tried to extricate him from the tent. But she wasn’t embellishing, she stressed, in saying he had never played anything like that before. The sax player ran after them, urging jazz lessons for Matt. Diane, as usual, got right on the phone. This time she called the precollege program at the New England Conservatory. At the audition, held two weeks later, Diane said Matt astonished the faculty.

Faced with a truly boxed-in boy, Kristine emphasized that she was no mere behind-the-scenes facilitator in the unfolding of Jake’s powers. She was a “fighter,” ready to do battle against a blinkered educational system prone to underestimate children’s potential. If a boastful tone crept in, and it did, Kristine’s immodest confidence (“I came to see my maternal intuition as a compass pointing true north”) and her crusading gumption (“the over-the-top ‘muchness’ of my schemes was a big part of the way I worked”) also drove her crucial decision. She pulled Jake out of state-funded developmental preschool, convinced he was shutting down out of boredom. The boy who clutched his alphabet flash cards (which his teachers told Kristine not to let him bring to school) wanted to learn, her intuition told her. Never mind grand expectations, her hope was to help pave his way into mainstream kindergarten.

At home, she now carved out time for activities Jake loved and was great at (like puzzles), not just for practice in what he couldn’t do (like sit still next to another child)—and at 3 he began talking again. That didn’t mean conversing. Still, Kristine was listening closely to his litanies and realized he wasn’t just reciting numbers but adding them, as well as reading and remembering everything. And she saw that Jake now constantly dragged around a college astronomy textbook she had bought at the local Barnes & Noble when she had found him sitting on the floor glued to it. But Kristine couldn’t forget about those social skills if he was going to have a shot at kindergarten. So she ended up running “a highly unorthodox kindergarten boot camp” for autistic kids, welcoming, rather than squelching, a common symptom: intense and persistent interests, in Jake’s case, astronomy.

A special program at the planetarium on the campus of nearby Butler University was the Barnetts’ turning point. A rapt Jake stunned the audience with an astute question about Mars’ moons, and on the drive home, couldn’t stop talking about the solar system. Jake “hadn’t been missing after all,” she realized, just because he was unreachable. Unhindered, he had been busy working: His repetitive behavior, much as some autism researchers have speculated, reflected detail-oriented curiosity rather than being merely a self-soothing habit. “Rage to master” was a relevant phrase coined by another psychologist, Ellen Winner, who concluded that a fiercely self-propelled drive was what set a true prodigy apart from a super-industrious high-achiever. “Nobody was telling Jake how to learn,” Kristine wrote, “because nobody thought he could. In that way, autism had given Jake a bizarre gift.”

Prodigies of all kinds deliver surprises, even as they also promise to reveal talent development insights for the rest of us. If anything, these boys—precisely by flouting the far-reaching hopes and plans of adults from the start—supply a perspective we could really use. All too often, the impulse to herald children’s gifts risks inspiring swelled heads and raising sky-high hopes that are likely to be disappointed. But adopt the viewpoint of the hypersensitive and remote child, and of the family hoping to help him feel less overwhelmed by the world, and the impulse to champion a child’s singularity becomes an opportunity—and an invitation to humility. Jake and Matt got the benefit of having grown-ups in their lives who, however determined they were to front-load intensive training for their children, quickly discovered the limits of being in a goal-focused hurry. If the boys’ gifts could help them connect with the world as they grew, that was progress. And if the most basic lesson they and their parents and mentors learned from one another was undaunted curiosity about what might lie in store, that marked a real advance, too.

Ann Hulbert is the author of Raising America: Experts, Parents, and a Century of Advice About Children and The Interior Castle: The Life and Art of Jean Stafford. Her articles and reviews have appeared in many publications, including The New York Times Book Review, The New York Review of Books, and The Atlantic, where she is the literary editor.

From Off the Charts: The Hidden Lives and Lessons of American Child Prodigies by Ann Hulbert (Knopf, Jan. 9, 2018).

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